OBJECTIVES: Research indicates that the increasing population of over 25 million people in the United States who have limited English proficiency experience differences in decision-making and subsequent care at end of life in the ICU when compared with the general population. The objective of this study was to assess the perceptions of healthcare team members about the factors that influence discussions and decision-making about end of life for patients and family members with limited English proficiency in the ICU.
DESIGN: Qualitative study using semistructured interviews with ICU physicians, nurses, and interpreters.
SETTING: Three ICUs at Mayo Clinic Rochester.
SUBJECTS: Sixteen ICU physicians, 12 ICU nurses, and 12 interpreters.
MEASUREMENTS AND MAIN RESULTS: We conducted 40 semistructured interviews. We identified six key differences in end-of-life decision-making for patients with limited English proficiency compared with patients without limited English proficiency: 1) clinician communication is modified and less frequent; 2) clinician ability to assess patient and family understanding is impaired; 3) relationship building is impaired; 4) patient and family understanding of decision-making concepts (e.g., palliative care) is impaired; 5) treatment limitations are often perceived to be unacceptable due to faith-based and cultural beliefs; and 6) patient and family decision-making styles are different. Facilitators of high-quality decision-making in patients with limited English proficiency included: 1) premeeting between clinician and interpreter; 2) interpretation that communicates empathy and caring; 3) bidirectional communication of cultural perspectives; 4) interpretation that improves messaging including appropriate word choice; and 5) clinician cultural humility.
CONCLUSIONS: End-of-life decision-making is significantly different for ICU patients with limited English proficiency. Participants identified several barriers and facilitators to high-quality end-of-life decision-making for ICU patients and families with limited English proficiency. Awareness of these factors can facilitate interventions to improve high-quality, compassionate, and culturally sensitive decision-making for patients and families with limited English proficiency.
OBJECTIVE: South Asian migrants have a higher burden of life-threatening diseases and chronic diseases compared to other ethnic groups. Yet, knowledge gaps remain around their palliative care needs in the host countries. The aim of the review was to present results from a systematic literature review of available international evidence on experiences with and perspectives on palliative care among older South Asian migrants, relatives, and healthcare providers.
METHODS: A systematic review in accordance with PRISMA guidelines was conducted in February 2018, searching PubMed, CINAHL, PsychINFO, and EMBASE databases. PROSPERO #CRD42018093464. Studies included empirical research, providing international evidence on experiences and perspectives on palliative care of South Asian migrants and were published between 2000 and 2018. Thematic synthesis was used to analyze data.
RESULTS: A total of 30 articles were included: qualitative (24), quantitative (5), and mixed methods (1). Three main themes were discovered: 1) palliative care practice within the family, 2) trust as a precondition of palliative care, and 3) the importance of knowledge and cultural competency. All the themes, to a greater or lesser extent, are related to access to and use of palliative care services by South Asian migrant families.
SIGNIFICANCE OF RESULTS : Involvement of family members in palliative care decision making could improve the satisfaction of South Asian migrant families toward the service. For example, Advanced Care Planning involving family members could be a possible way to engage family members in palliative care decision making. Supportive interventions, e.g. providing knowledge, aimed at patients and their family members might improve knowledge and increase awareness among South Asian migrant families of palliative care. Knowledge gained from this review could be implemented with other ethnic minority groups.
BACKGROUND: Migrants seem to be underrepresented in palliative care in Germany. Access barriers and challenges in care remain unclear. We aimed to provide a comprehensive insight into palliative care for migrants, using expert interviews.
METHODS: Interviews with experts on palliative and general health care for migrants were audiotaped and transcribed. Data analysis followed a qualitative content analysis method for expert interviews proposed by Meuser and Nagel.
RESULTS: In total, 13 experts from various fields (palliative and hospice care, other care, research and training) were interviewed. Experts identified access barriers on the health care system and the patient level as well as the sociopolitical level. Services don't address migrants, who may use parallel structures. Patients may distrust the health care system, be oriented towards their home country and expect the family to care for them. In care, poor adaptation and inflexibility of health care services regarding needs of migrant patients because of scarce resources, patients' preferences which may contradict professionals' values, and communication both on the verbal and nonverbal level were identified as the main challenges. Conflicts between patients, families and professionals are at risk to be interpreted exclusively as cultural conflicts. Palliative care providers should use skilled interpreters instead of family interpreters or unskilled staff members, and focus on training cultural competence. Furthermore, intercultural teams could enhance palliative care provision for migrants.
CONCLUSIONS: Though needs and wishes of migrant patients are often found to be similar to those of non-migrant patients, there are migration-specific aspects that can influence care provision at the end of life. Migration should be regarded as a biographical experience that has a severe and ongoing impact on the life of an individual and their family. Language barriers have to be considered, especially regarding patients' right to informed decision making. The reimbursement of interpreters in health care remains an open question.
Background and Objectives: Advance care planning (ACP) is a critical component of health care affecting the quality of later life. Responding to the increase in the older immigrant population in the United States, this empirical study explored the racial/ethnic gaps in ACP behaviors among older immigrants and examined the end-of-life (EOL) care planning and preferences of foreign-born immigrant older adults focusing on race/ethnicity, acculturation, health need factors, and enabling social factors (financial capability, public assistance, and informal supports) after controlling predisposing factors (sociodemographic characteristics).
Research Design and Methods: Using a subsample from the National Health and Aging Trends Study 2011 and 2012, hierarchical logistic regression models of the EOL plan and preferences were examined with 50 multiple imputation data sets (n = 232).
Results: Descriptive statistics reveal lower ACP engagement of immigrants from racial/ethnic minority groups. In logistic models, however, only Black immigrants were less likely than Whites to have EOL conversations. Among acculturation factors, age at immigration was only negatively associated with having a durable power of attorney for health, but not significantly associated with other ACP behaviors. Instead, health and social factors, primarily need in health and informal support (i.e., number of coresidents and receiving financial help from family members), were associated with different types of ACP components. Receiving public assistance (i.e., receiving Medicaid and SSI) were positively associated with EOL treatment preferences.
Discussion and Implications: Older foreign-born immigrants, in general, showed lower ACP engagement than the overall older population. Moreover, minority immigrants were lower on ACP engagement than both White immigrants. This study highlights the need for formal and informal assistance for enhancing EOL planning for older immigrants. Adding to the culturally competent approach, policy efforts should address social and health factors that accrued throughout individuals' life spans and affect older immigrants' EOL preparation and care.
REVIEW QUESTION/OBJECTIVE(S): This review aims to identify and synthesize the best qualitative evidence on the experiences of Chinese immigrants receiving palliative care in their country of residence where the culture is predominantly western, and the experiences of their family carers.
INTRODUCTION: The recent increase in international immigration has led to challenges in providing culturally appropriate palliative care. Chinese populations have particular beliefs, values and practices surrounding death and filial piety. These differ significantly from those in western cultures and have significant implications for palliative care service provision. This review will explore the experiences and perceptions of Chinese immigrants and how their cultural beliefs shape their acceptance and decision making related to palliative care.
INCLUSION CRITERIA: The review will include studies on the experiences of Chinese immigrants aged over 18 years old with a terminal medical condition receiving palliative care in outpatient units, hospitals, hospices, specialist palliative care units, homes and community settings in their country of residence where the culture is predominantly western.
METHODS: Eligible studies will be studies with qualitative data including designs such as phenomenology, grounded theory, ethnography, narrative research, qualitative description, action research and feminist research published in English and Chinese. CINAHL, PsycINFO, MEDLINE, Scopus and Web of Science Core Collection will be used and grey literature will be searched using ProQuest Dissertations and Theses, OpenGrey and Caresearch. Appraisal of selected studies will be done with the Joanna Briggs Institute Qualitative Assessment and Review tool. Findings will be synthesized through a meta-aggregative approach to produce a comprehensive set of synthesized findings that can be used as a basis for evidence-based practice.
Latinos are less likely to have an advance care plan, use hospice or palliative care services, and have conversations about end of life than the general population. This article describes processes and outcomes of a Latino lay health advisor advance care planning training program in eastern North Carolina. An exploratory case study was used to understand the perspectives of Latino leaders. Two Latino leaders completed an advance care planning training in 2016. Data were generated from field notes, interviews, and observations. A description of the social and contextual conditions in the study setting facilitated data analysis. The primary finding, “planting the seeds,” was the strategy that began the conversation of advance care planning. “Planting the seeds” meant introducing the topic carefully to ensure the person is ready to listen, the information will be accepted, and capacity will be gained to make informed decisions. Training Latino lay health advisors in advance care planning has the potential to eliminate health disparities.
The purpose of this study was to examine relationships between attitudes toward planning for end-of-life (EOL) care and social supports, spirituality, distrust of the US healthcare system, and acculturation; and to investigate a relationship between attitudes and communication of EOL wishes in Iranian-American older adults. A descriptive, cross-sectional study was used. Older adults (N = 135) were surveyed using Qualtrics online software. The participants were new immigrants to the U.S., highly educated, and insured with a generally positive self-reported health status. Of this sample, 47.4% reported that they communicated their EOL wishes orally or through written documentation. Favorable attitudes toward planning were associated with acculturation and healthcare system distrust, and, inversely, were negatively associated with spirituality. No significant association was found between attitudes and social support. Favorable attitudes predicted participants’ communication of wishes. The findings can inform the provision of effective interventions to enhance culturally competent EOL care.
Relatively little is known about the experiences of Chinese widows, especially those living outside China. This qualitative study examines the experiences of eight Chinese or Hong Kong-born widows living in the UK. Using a semistructured approach to interviewing, participants were asked about their lives before, during, and after their spousal bereavement. Five major themes emerged: (1) complexity of marital lives; (2) experiences around the time of the death including fate; (3) loneliness and isolation; (4) the challenges of practical tasks; and finally, (5) current life. The implications of the findings for social policy and practice are briefly discussed.
Background: Little is known about how immigration status influences preference for life-extending care (LEC) at the end of life (EoL).
Objective: The purpose was to determine how preference for LEC at the EoL for advanced cancer patients varied by Latino ethnicity and immigrant status, and over time between two large cohorts.
Methods: Data were derived from two sequential multi-institutional, longitudinal cohort studies of advanced cancer patients, recruited from 2002 to 2008 (coping with cancer I [CwC-1]) and 2010 to 2015 (coping with cancer II [CwC-2]). Self-reported U.S.-born whites (whites) (N = 253), U.S.-born Latinos (US-L) (N = 34), and Latino immigrants (LI) (N = 65) with a poor-prognosis cancer were included. The primary independent variables were immigrant status, Latino ethnicity, and CwC cohort. The primary dependent variable was preference for LEC.
Results: Within CwC-2, LI were 9.4 times more likely to prefer LEC over comfort care versus US-L (adjusted odds ratio [AOR] = 9.4; 95% confidence interval [CI]: 1.2–72.4), and US-L were 0.3 times less likely to prefer LEC versus whites (AOR = 0.3; 95% CI: 0.1–1.0). LI from CwC-2 were 11.4 times more likely to prefer LEC versus LI from CwC-1 (AOR = 11.4; 95% CI: 2.7–48.4). Within CwC-1, there was no difference in LEC preference between LI and US-L, nor between US-L and whites.
Conclusions: Immigrant status had a strong effect on preference for LEC at the EoL among the more recent cohort of Latino cancer patients. Preference for LEC appears to have increased significantly over time for LI but remained unchanged for US-L. LI may increasingly want LEC near death.
BACKGROUND: In increasingly multi-ethnic societies fostering cultural awareness and integration of immigrants is not only a political duty but also an obligation for social and healthcare systems. Importantly, cultural beliefs and needs strongly impact on the quality of life of cancer patients and may become even more crucial at the end of life. However, to date, ethnic and cultural aspects of palliative care are insufficiently researched.
METHODS: This qualitative study at the Medical University of Vienna included 21 staff members from different disciplines in oncology and palliative care working with patients with various cultural backgrounds at the end of life. Semi-structured interviews were performed to gain insights into specific aspects of palliative care that are important in the clinical encounter with terminally ill cancer patients with migrant backgrounds and their relatives.
RESULTS: Interviews revealed specific aspects of palliative care, which fell into four fundamental categories and were all perceived as beneficial in the clinical encounter with migrant clients: (A) structural and (B) personal conditions of the palliative care setting, (C) specific care and treatment intentions and (D) personnel requirements and attitudes.
CONCLUSION: This study revealed first insights into possibilities and prospects of transcultural palliative care for migrants and their relatives. The results might have important implications for the end of life care in this growing population.
Approximately 30-40 million undocumented immigrants worldwide suffer restricted health care. A scoping review was conducted to determine what is known about this population's palliative end-of-life care experiences. The scoping review followed Arksey and O'Malley's methodological framework. Databases searched included CINAHL, Medline, ProQuest, Scopus, and PHRED. Search terms included uninsured care, palliative care, undocumented immigrants, and terminally ill. The search revealed limited peer-reviewed and grey literature on the topic. A total of six articles met inclusion criteria, of which four were case descriptions. Barriers to palliative care included lack of advanced care planning, lack of health insurance, poverty, fear of deportation, and limited English ability. Undocumented immigrants were more likely to have delayed access to and inadequate palliative end-of-life care. If palliative care is a human right, it is imperative that further research be conducted and policies put in place to better serve this vulnerable population at end-of-life.
Objective: This study examined the association between transnational death and psychological distress among undocumented Mexican immigrants. The Minority Stress Model and a disenfranchised grief perspective were used as frameworks for this study.
Method: Respondent driven sampling (RDS) was used to collect data from clinical interviews with 248 undocumented Mexican immigrants residing near the US–Mexico border.
Results: After controlling for relevant covariates, experiencing transnational death was a significant predictor of clinically significant distress in this at-risk population.
Conclusions: Our findings underscore the need to contextualize transnational death among undocumented immigrants from a perspective of disenfranchised grief that requires the development of contextually and culturally sensitive interventions aimed at addressing the high prevalence of transnational death and its associated distress in this marginalized population.
Alix est en première. Elle traverse une période difficile suite au décès de son grand frère Paul par noyade quelques mois auparavant. L’ambiance est pesante à la maison car sa mère s’est laissé sombrer et son père a dû mal à faire face. Elle a le soutien de sa meilleure amie Jeanne. Dans la communauté où vit cette dernière sont accueillis deux jeunes réfugiés syriens : Aylan et son frère Elyas. Entre Alix et Elyas l’attirance est immédiate. Ils vont se soutenir l’un l’autre face aux deuils qu’ils traversent chacun.
Background: Persons of South Asian origin (SAs) are the fastest growing minority group in the United States. Culturally competent care for patients and families of SA origin necessitates an understanding of the cultural factors that affect decision-making for palliative and end-of-life care.
Objective: To better understand health-care providers' perspectives on decision-making among seriously ill persons of SA origin.
Method: Data were collected in a US Midwestern city, predominantly in 2 hospital-based health-care systems along with a few interviews of private practitioners. Researchers conducted a thematic analysis of data. Transcripts were coded individually, coding disagreements resolved through discussion and themes arrived upon by consensus.
Results: Health-care providers reported that numerous factors interact to influence decision-making among SAs. Patient-based factors include education, time spent in the United States, expectations of physician-directed care, and spiritual beliefs. Family-based factors include a norm of family-based decision-making and a complex distribution of decision-making responsibilities among family members. Provider-based factors include challenges reconciling SA and American approaches to decision-making. Community-based factors include negative attitudes and a lack of education regarding palliative care and the potential role of community support in health-care decision-making.
Conclusions: A rich cultural context influences health-care decision-making among seriously ill SAs. An understanding of this context will enhance providers' cultural competence and likely improve services to this growing population.
Purpose: Refugees may be at risk of experiencing a complicated form of bereavement. As yet, however, the nosological status of this putative category across cultures remains in question. We apply qualitative and quantitative methods to investigate the manifestations, prevalence, factorial structure and psychosocial correlates of complicated bereavement amongst refugees from West Papua, a population with no past exposure to western concepts of grief or to formal mental health services.
Methods: Qualitative methods (focus groups and informant interviews) were used to identify cultural expressions of complicated bereavement derived from international classification systems, that is, DSM 5 persistent complex bereavement disorder (PCBD) and ICD-11 prolonged grief disorder (PGD) in developing a structured interview applied by trained field workers. Participants were adult West Papuan refugees and their offspring recruited from households (n = 486, response 85.8%) across nine villages in a remote town in Papua New Guinea.
Results: The qualitative data obtained from focus groups (n = 20) and informant interviews (n = 4) with local psychiatrists supported the cultural validity of complicated bereavement. 16% (n = 78) of the sample met criteria for PCBD based on DSM-5 criteria and 103 (21%) met criteria for PGD based on ICD-11 criteria. Confirmatory factor analysis yielded a six-factor model of complicated bereavement with a moderately good fit to the data. The model included dimensions of anger/negative appraisal (AN), avoidance/giving up, estrangement from others, and confusion and diminished identity. In contrast, the DSM-5 three-factor model and the ICD-11 two-factor model each yielded a poor fit. Cumulative traumatic losses (ß = 0.16, P = 0.03), duration since displacement [(ß = 0.10, P = 0.02)] and postmigration living difficulties (ß = 0.20, P = 0.01) were associated with an aggregated index of complicated bereavement, supporting the concurrent validity of the structure identified.
Conclusions: Culture and exposure to persecution and displacement may contribute to the content and configuration of the complicated bereavement reaction, an issue that requires recognition in international classification systems and clinical practice.
Using a cross-sectional study, this article addresses end-of-life (EOL) care for older Iranian-American adults. The purposes are twofold: (a) to explore participants’ preferences for home or hospital care in the event they face EOL conditions and (b) to learn how participants prefer to communicate these preferences. Results showed that about half of the 130 participants had communicated their EOL care preferences through written documents and/or verbal discussions. A set of factors predicted the preferences ( 2(9) = 17.42, p < .042) and communications ( 2(9) = 19.54, p = .021). Regression models indicated that higher scores of social support (p = .013) and greater numbers of cohabitants (p = .021) were associated with a preference for home care, and experience of a loved one’s death was associated with participants being willing to communicate their preferences for type of care (p = .015). This study can bridge the gap between culturally diverse older adults’ preferences and types of EOL care they ultimately receive.
Quand on est d'ici et d'ailleurs, où reposer ? Le choix de funérailles au pays natal peut clore une vie déracinée et entraîner les vivants dans une épopée héroïque digne d'Antigone qui, dans la tragédie grecque, défia les lois de la cité pour enterrer son frère. Il arrive aussi que l'incongruité des situations invite l'humour dans les préparatifs. Élisabeth Pasquier et Anne Bossé, chercheuses en sociologie, architecture et urbanisme, ont écrit une pièce à partir d'entretiens réalisés avec des fils et filles de migrants, des médecins, des professionnels du fret aérien et des pompes funèbres.
OBJECTIVES: The knowledge of brain death is fundamental for being able to understand the organ donation process and for ensuring its acceptance or rejection. Here, we analyzed the level of knowledge of the concept of brain death among Latin-American individuals who are residents of Spain to determine the factors affecting this knowledge.
MATERIALS AND METHODS: Our patient group was a sample of 1314 Latin-American residents of Spain, obtained randomly and stratified according to the respondent's nationality, age, and sex. Their attitude was assessed using a validated questionnaire. The survey was self-administered and completed anonymously.
RESULTS: The questionnaire completion rate was 94% (n = 1237). Of total respondents, 25% (n = 313) knew the concept of brain death, which they considered to be an individual's death, 56% (n = 697) did not know the term, and 19% (n = 227) believed that it did not mean death. The variables related to knowledge of the brain death concept included (1) country of origin, with a better knowledge among those with Mexican nationality (P < .001); (2) male sex (30% vs 23%; P = .003); (3) having university-level education (35% vs 23%; P = .044); (4) having discussed the matter within the family (29% vs 23%; P = .044); (5) having a partner with a favorable attitude toward donation (39% vs 21%; P = .001); and (6) the respondent's religion (47% vs 7%; P < .001). The following factors persisted in the multivariate analysis: country of origin (odds ratio of 2.972), sex (odds ratio of 1.416), education level (odds ratio of 2.228), attitude of the respondent's partner (odds ratio of 1.835), and religion (odds ratio of 4.490).
CONCLUSIONS: Knowledge of the concept of brain death is limited among Latin-American residents of Spain, with marked differences among country of origin and other socio-personal factors.
BACKGROUND: Mobile health (mHealth) technology holds promise for promoting health education and reducing health disparities and inequalities in underserved populations. However, little research has been done to develop mHealth interventions for family caregivers of people with dementia, particularly those in rural Hispanic communities, who often serve as surrogate decision makers for their relatives with dementia.
OBJECTIVE: As part of a larger project to develop and test a novel, affordable, and easy-to-use mHealth intervention to deliver individually tailored materials in rural Hispanic communities, in this pilot study, we aimed to examine (1) characteristics of people with dementia and their family caregivers in rural Hispanic communities, (2) caregivers' preferences for types and amounts of health information and participation in surrogate decision making, and (3) caregivers' mobile device usage and their desire for receiving information via mobile devices.
METHODS: This was a cross-sectional survey. A convenience sample of 50 caregivers of people with dementia was recruited from rural health care facilities in Southwest Texas during 3 weeks of April 2017 to May 2017 via word-of-mouth and flyers posted at the facilities.
RESULTS: More women than men were in the patient group ( 21=17.2, P<.001) and in the caregiver group ( 21=22.2, P<.001). More patients were on Medicare and Medicaid; more caregivers had private insurance (P<.001 in all cases). Overall, 42% of patients did not have a power of attorney for their health care; 40% did not have a living will or advance directive. Caregivers were interested in receiving all types of information and participating in all types of decisions, although on subscales for diagnosis, treatment, laboratory tests, self-care, and complementary and alternative medicine, their levels of interest for decision-making participation were significantly lower than those for receiving information. On the psychosocial subscale, caregivers’ desire was greater for surrogate decision-making participation than for information. Caregivers did not differ in their interests in information and participation in decision making on the health care provider subscale. All but 1 caregiver (98%) owned a mobile phone and 84% had a smartphone. Two-thirds wanted to receive at least a little dementia-related information via a smartphone or tablet. The amount of dementia-related information caregivers wanted to receive via a mobile device was significantly greater for women than for men (U=84.50, P=.029). Caregivers who owned a tablet were more likely to want to receive dementia-related information via a mobile device than those who did not own a tablet (U=152.0, P=.006).
CONCLUSIONS: Caregivers in rural Hispanic communities were interested in receiving a wide range of information as well as participating in making decisions for their relatives with dementia. There is much need for effective mHealth interventions that can provide information tailored to the needs and preferences of these caregivers.
AIMS AND OBJECTIVES: To identify factors that influence the engagement of Chinese Australians with advance care planning.
BACKGROUND: Despite the benefits of advance care planning, there is a low prevalence of advance care planning in the Chinese Australian community. Reasons for this are often cited as cultural considerations and taboos surrounding future medical planning and death; however, other logistical factors may also be important.
DESIGN: This qualitative study used a thematic analysis grounded theory approach to explore facilitators and barriers to engagement in advance care planning.
METHODS: Semistructured interviews were conducted in-language (Mandarin or Cantonese) exploring the views of a purposive sample of 30 community-dwelling older Chinese Australians within Victoria, Australia.
RESULTS: Three key themes were identified: knowledge of, attitudes towards and needs for undertaking advance care planning amongst the Chinese Australians. There was a low awareness of advance care planning amongst the participants and some confusion regarding the concept. Most participants reported positive attitudes towards advance care planning but acknowledged that others may be uncomfortable discussing death-related topics. Participants would want to know the true status of their health and plan ahead in consultation with family members to reduce the burden on the family and suffering for themselves. Language was identified as the largest barrier to overcome to increase advance care planning awareness. In-language materials and key support networks including GPs, family and Chinese community groups were identified as ideal forums for the promotion of advance care planning.
CONCLUSIONS: The participants of this study were open to conversations regarding future medical planning and end-of-life care, suggesting the low uptake of advance care planning amongst Chinese Australians is not culturally motivated but may be due a lack of knowledge relating to advance care planning.
RELEVANCE TO CLINICAL PRACTICE: The results highlight the need to provide access to appropriate in-language advance care planning resources and promotion of advance care planning across the Chinese community.